Ultra Rare Diseases seem so far away the view is if its rare it won't affect me or us but the problem is it might that is why we are here to help the little children who it ha affected.

We are here to give people hope and to give them support for when times become tough and you need a friend to talk to or be at the end of a phone line but because its an ultra rare disease you feel you can talk to know one as you feel as if you are on your own.

We at The Ultra Rare Disease Disorders,& Disabilities Foundation is there to help and to give you support and friendship we are there to help with child care and we are there for support when times become tough for you and you feel alone we want to fill that gap for you and give you a place of refuge to come to when you are feeling low.

We want to give the patient support also by having specially adapted rooms for you to play in these rooms will be special as they will be built to help your needs we want to put sensory equipment installed in all of them to help you pass away the long hours and to help you have some inner peace we hope we will have other children there who feel just the way you do.

And for the brothers and sister's we want to have a coffee shop to enable them to meet with other children who are going through the same feeling as you are we hope to have a child psychologist on site to help you talk about the feelings you have and the fears that you cannot talk to your parents about it will be a place to meet